Hey everybody! I have the last of our Parent Perspective stories today, but here's the trick: Robin Yozzo, mother of camper Alex, had so many enlightening and lovely things to say that I couldn't bring myself to cut anything out. Therefore, Alex and Robin's story is pretty long. I, of course, strongly encourage you to read all the way through, though. It's long, but absolutely worth the read, especially for future counselors and camper parents. Camper parents! I mean it! Read on! And enjoy. :)
Here's Robin Yozzo's story--in her words--about her son, Alex, and their first experience with Mt. Hood Kiwanis Camp:
Alex was a fresh 14. He had literally
turned 14 two days before he went up to Kiwanis Camp. He had never
stayed away from home on his own. This was truly a first. Other
kids—typically developing kids—who are 14 have the possibility of
staying away from home a lot of times. You know, it's high at 14.
This was his first time away, and not only was it away, it was far
away. It's like three hours from Eugene to Mt. Hood to drive, so a
six-hour round-trip for us. It was a social worker who told us about
the program back in September before the January that we had to
register. And I honestly thought she was nuts when she first emailed
me about it. I said, “Did you email me by mistake? This is Alex's
mom.” And she said, “No, Robin, I am talking about Alex.” And
truly I thought I was going to throw up. There was a lot of that
feeling nauseous while we were on the topic. Seriously, I thought,
“Are you kidding me?” But I did write it on the calendar, because
she said, “Even if you're feeling funny about it now, write it on
the calendar because you have to register in January for July. You
have to be ready; the spaces fill up fast.” So I wrote it on the
calendar, flipped the calendar back, and didn't really think any more
about it.
Before I knew it, it was January and I thought, “Well,
I'd better just sign him up. I can always sign him up and then say
'No, thank you,' but I'd better get him a spot.” It was really easy
to sign him up. That process went really smoothly. I did sign up to
have a companion go with Alex because he's got severe cerebral palsy
from birth. Full term baby, just Surprise, here's Alex not breathing
well at first, lack of oxygen to his brain. He doesn't speak at all,
does not eat by mouth. It's fully through feeding tube. He does have
a seizure disorder that is controlled by medication. He doesn't bear
any weight. You know, he's completely dependent on whoever the
caregivers are who are with him, so you can see where my fear would
come from. If he knew something was wrong, he couldn't even tell
anybody. It's that we know him best, and we had to completely say,
“Okay, camp counselors! Here's Alex, and we'll see you in five
days.” We could just do our best to tell everyone about Alex, and
our paperwork went up ahead of us.
They knew about Alex before we got
there, but only on paper, you know. That's where the fear as a parent
came from just taking him up there and leaving him there. Gosh, I
feel a little nauseous just thinking about it now because it was
just so emotional! I can't even describe it to you. It was so scary!
We ended up not even taking the companion up with us. I called
Lindsay up in February and said to her, “I don't know if I even
need to do this companion thing. Can we just talk about it?” And
she put me completely at ease. I told her all about Alex on the
phone—all the details. He doesn't really sleep well at night
because he has sleep apnea, so not only is he attached to a feeding
pump, but he also has the CPAP on. He needs to be changed. It's just
a full-on caregiver mode with Alex.
Lindsay said, “I don't hear
anything that makes me think you need that extra caregiver companion.
It's up to you, but I think it's going to be okay. We have a nurse on
board 24 hours, he's going to have at least one one-on-one
counselor.” That's where the students come in. She actually made
me feel comfortable letting that slot go and say okay, we don't need
the companion. You know, let somebody else who needs that companion
take that slot.
So we got up there—it was very easy
to find, and the list of things they told us to bring was very
helpful. The check in process was very easy. We actually ended up
with two counselors, Marie and Brenda. One was studying to be a life
skills classroom teacher and one was studying to be a physical
therapist, so Alex was perfect. They were perfect for him and he was
perfect for them. It was a great match, the three of them together.
It's funny—when you tell me that folks are nervous to become
counselors, it makes me smile because when we got up there, the two
of them, Brenda and Marie, were right on Alex. I didn't see a fear of
being around Alex, but there was such an eagerness, like they had
clipboards with questions. Because they had heard about Alex and read
about him, but they didn't know him. It was funny, because it was
like, “Well, what medications does he take?” and “How often a
day is that?” and “What is that for?” And these were things
that they didn't have to know about because they wouldn't be doing
the medications. It was just interesting because they were so eager
to know about Alex. It was awesome.
There was another lady up there,
Amber. She had been up there for years—I want to say this was her
third or fourth summer helping out up there—and she was going to be
working up there the whole summer. She's a life skills aide in a classroom,
and she saw the fear on my face when I was checking in with the nurse
and checking over Alex's machinery that he's hooked up to, and she
said, “Robin, this nurse that checks you in delegates to the rest
of us. This one nurse is not going to be doing all the kids.”
She could see that I just felt like “Oh my gosh.” You
know, this was the part that was scaring me.
So I found that folks
were really...perceptive. The could see the nervous mom. I had one
wheelchair wheel out the door ready to go back down the mountain and
take him home if one thing had put me off, you know what I mean?
That's how I felt! Meanwhile, Alex was completely smiling, laughing
through the whole thing. We were hardly with them for any amount of
time. We got in, showed them his pumps and everything, unpacked some
of his stuff. They even took care of putting most of the stuff away,
honestly. We changed him so that people could see how to get him out
of his wheelchair and get him on the bed and what's comfortable for
him. And then they said, “Okay, Mom and Dad, we've got this.” And
I said, “Wow, I think we're being dismissed!” And they said,
“Yep! We feel comfortable. Go ahead; we're good.” I think they
figured I would just stay there all night, you know. But they were so
good and respectful about it, really.
We did have sleeping issues the next
day. My husband and I went hiking, you know, because he had planned
to do things that weren't Alex-friendly. Things that we couldn't do
if Alex was with us. So we were hiking and my phone rang, and sure
enough it said “Kiwanis Camp” and I thought, “Oh, no. What
happened?” There wasn't a good night's sleep. Alex was awake at
two, and when he wakes up, that's it. That's it for the night. He's
just very gaggy when he wakes up, so he was coughing and gagging. He
was going to wake up other kids and other counselors, so they moved
him to where they do arts and crafts. They just dragged a mattress in
there and someone slept in there with him.
I thought she was
going to tell me to come and get him, but she said, “Oh, no! I'm
just telling you what the set up is and asking if that's okay.” And
I said, “Well, it is if it's okay with you folks,” and she said,
“Yep! I'm just going to put this in his file so we know that this
is what we need to do for Alex next year.” I mean, she was talking
about next year already! This was just the first night, and it wasn't
even a good night at all. The nurse came in at three in the
morning—it was one of those situations. It wasn't good. But they
made it good, if that makes
sense. And it's funny, because when we went up there for the family
night on Thursday, they said the counselors were fighting over who
was going to sleep in there with Alex because it was actually more
comfortable than the other areas where the counselors had to sleep.
It was the craft house by day and the Alex Yozzo Private Sleeping
Quarters by night, and they just totally made that work.
I was sent
pictures and a daily blog of what he did every day, so it was
awesome. And when we went up there for the family barbecue on
Thursday, you could just see that Brenda and Marie were so much more
comfortable. They had their own little system going on. They shared
the different activities they did with Alex. I could tell by the
pictures. You could tell Alex was—well, thankfully he smiles a lot.
You know, he's a very happy, smiley kid. So you could tell that he
was excited to see his family, but when it came to the skit part of
the night, he was right there in it. He wasn't even looking at us. He
was looking at the stage. It was really cool. Like, “Yeah, these
are my new friends.” It was something that I hadn't seen in him
before. He was totally into it. He was completely engaged in what was
going on. There was no look of, “Gosh, you left me here. What's up
with that?” He was just right in it. It was a complete tear-jerker
situation, I can tell you that. Oh my god.
We
had stayed overnight in a hotel really close by for pickup the next
day, and I had actually asked if we could pick Alex up at nine
instead of ten just so we could get a head start back to Eugene, and
Amber actually said, “You know, this is our last bit of time with
the campers, and it's when we give out their little certificates and
have an award ceremony.” Basically it was a “Nope! See you at
ten!” Haha so I was of course the first parent there at the gate
the next morning, right? But it was their time! Of course I had to
smile.
Just the things they did were things Alex would never get a
chance to do. They'd go fishing in that little pond. The picture
that's up in his room is of him zip-lining. They had a line above and
a line below so that someone was with him. One of his counselors—she
looked petrified—was wearing a helmet and walking along like a
tightrope walker, and here comes Alex in this giant net thing with a
helmet, strapped in like he was going nowhere, and another guy
strapped in behind him. They're going over the creek. It's just a
fabulous picture. And he went up in something called The Squirrel.
It's the same kind of setup, but he's 35 feet up in the air, like in
the trees. By himself! They just pulled him right up there. Of
course, we didn't know he would be doing all of these things until we
got his pictures developed. It was like, “What's this up in the
trees?” “That would be Alex!” I mean, it's just things that we
would never even think to have him do. We didn't know it was
possible! Honestly, it was just an incredible experience, really. It
really was. Just amazing.
It's
just the things the counselors kept up on. We sent a diary with him,
but they made their own diary and they were really good about writing
in it. They were apologizing, saying, “I'm sorry, I don't think we
got a chance to write everything down.” But I wouldn't have known
the difference. I wouldn't have thought anything was left out because
it was so full of stuff. Campfires and hikes, and of course
everything is wheelchair accessible. The setup was just awesome. I
understand that the folks who set this up are experienced and have
been doing this for many years, but you're still apprehensive until
you go and actually experience it. Because you think, “Well how can
they be ready for Alex?” But truly they were! And I'll still be
nervous this year because Alex will be away from us, but he did so
well that I know it's just my own problem to get over. Because he
really did fabulously. I can't say enough good things. I've come back
to Eugene and told teachers and aides and other parents that it was
incredible. We've taken his pictures all over, made him a little
collage to put up in his room, and told parents they should really
look into this. And I can see the fear on their faces, exactly like
what I had. But it is an incredible experience. He's all ready for
next year. It's right after his birthday again.
Advice for future counselors:
Be
open minded. I'm sure that people already know you need a lot of
patience. Be ready for a ride! It's such a fulfilling experience.
It's a humbling experience because you don't realize how fortunate
you are you be able to just jump out of bed and dress yourself and
take showers. Things we take for granted. The ADLs—activities of
daily living. It's a routine for us, whereas so many others are not
able to do that. Just be ready and open your hearts. You know, I
truly believe that every day, Alex teaches at least one person
something. It's going to be an amazing experience.
And I would say
thank you to everyone who volunteers to do this. Special needs kiddos
don't have as many opportunities to go and do stuff like this. For
some of these kiddos, this is the absolute funnest thing they look
forward to all year. These five days might be the absolute five
funnest of the whole year. It's a big deal for them, and when it's
over, they'll be talking about next year. They're just looking to
have fun, and they just need some help being safe along the way. So
thank you. I'm excited this year. Alex showed me that I don't have
have to be afraid to let him go.
Last night, I had the joy of talking with the rest of the MHKC @ PSU staff, and a ton of interesting conversation ensued. I was prompted to go check out a TED Talk by Brene Brown, which naturally led me down a TED rabbit hole (rarely a bad thing). Sometimes I feel weird about using this blog to share longish videos--specifically TED Talks--with you all, but I just like them so much and think there is a lot of thought-provoking content found in them, so I like passing them along. 
